Background: Individuals with a very high lifetime risk of developing pancreatic ductal adenocarcinoma; for example, hereditary pancreatitis and main-duct or mixed-type intraductal papillary mucinous neoplasm, may wish to discuss prophylactic total pancreatectomy but strategies to do so are lacking.
Objective: To develop a shared decision-making programme for prophylactic total pancreatectomy using decision tables.
Methods: Focus group meetings with patients were used to identify relevant questions. Systematic reviews were performed to answer these questions.
Results: The first tables included hereditary pancreatitis and main-duct or mixed-type intraductal papillary mucinous neoplasm. No studies focused on prophylactic total pancreatectomy in these groups. In 52 studies (3570 patients), major morbidity after total pancreatectomy was 25% and 30-day mortality was 6%. After minimally invasive total pancreatectomy (seven studies, 35 patients) this was, respectively, 13% and 0%. Exocrine insufficiency-related symptoms occurred in 33%. Quality of life after total pancreatectomy was slightly lower compared with the general population.
Conclusion: The decision tables can be helpful for discussing prophylactic total pancreatectomy with individuals at high risk of pancreatic ductal adenocarcinoma.
Keywords: Pancreatic ductal adenocarcinoma; cancer risk; diabetes mellitus; hereditary pancreatitis; intraductal papillary mucinous neoplasm; mutation; prophylactic total pancreatectomy.